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POTSius

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  1. For me muscular overuse triggers symptoms, so I only massage like 30 seconds at a time as the massaging itself can be quite straining, but I do it a lot over the course of the day, like a dozen times or so. That actually seems to work! I don't know the specifics of your other health problems but maybe that is helpful info
  2. @POTSAly Are you 100% sure it is pressure inside your head? Maybe it is muscle tension in the muscles around your head and neck? I used to get bad headaches until I started to massage my temples, as I describe in the following post.
  3. I have tried prazosin (an alpha 1 blocker) It helped with my normally very cold hands and I think I felt a little better overall But I had worse GI symptoms and fatigue (maybe due to the GI symptoms?) Another thing to note is that, at least for me, when I discontinued the prazosin I had some mild "withdrawal" effects, or maybe just a coincidental flare up in symptoms.
  4. Here is a study that supports the use of oral rehydration solution (ORS) in POTS https://pubmed.ncbi.nlm.nih.gov/31405524/
  5. @Sarah Tee That is great that this is helping You should look into oral rehydration solutions, you can buy or make They have water and salt but also sugar and other stuff to help it be even better absorbed, or something like that. Maybe it would help more?
  6. @dancer65 Thanks for all the advice. I am young so I think that must be it. Good to know it is something that might tighten later. Can definitely feel that last stretch for the neck!
  7. @dancer65 Thanks for the advice, I looked up False Cardialgia and it sounded like an interesting idea. As I noted above, it really did feel like the pain was heart palpitations. I tried the stretch and I found a lot of soreness in whatever muscles pull the shoulder blades together, maybe that is what I need to work on next. I will have to try further for the pecs, as I could not get a stretch feeling there doing this.
  8. I get something similar when in a particularly bad flare up I find heating my core helps (even though it is my legs that are often shaking) I use an electric heat pad I also don't feel cold, but the heat still helps I find that the muscles that are shaking are sore and if I massage them the shaking improves
  9. Thanks @Pistol I am extra happy as it did not involve adding yet another med!
  10. I wanted to share that I have had great improvement with two longstanding and debilitating chest pain symptoms via self massage! the symptoms were: 1. a bad pain in the center of my chest 2. a fluttering sort of sensation in my chest I massage the muscles between the ribs (which I did not even know existed! they are used for breathing) and also right at the junction of the ribs and the sternum (center of chest). I massage these areas only for maybe 30 seconds at a time, but like a dozen times a day. I hypothesize the key here is repetition. I search for sore regions and mass
  11. I have hyperadrenergic POTS and feel strong emotion in general can trigger similar symptoms Watching a tense sports game, playing cards, tense or suspenseful books/tv I attribute it to an excessive sympathetic nervous system response All of these things should lead to some sort of response in a normal person, people like us just get an excessive response Clonidine/beta blockers seem to help for me In short, I think it is not a separate disease, just part of some peoples hyperadrenergic POTS (or other dysautonomia)
  12. @RecipeForDisaster Are you sure the slow/deep breathing you do is helping? also: "It doesn’t sound as legitimate as I’d like, you know? I know it’s real, but man, I don’t think it sounds that serious to the average person." I think many on this board can relate, with POTS as well Maybe you can just say you have a form of dysautonomia and you don't want to talk about it.
  13. I have read that deep breathing can lead to hyperventilation as well. It is a misconception that hyperventilation is only fast breathing. You can also hyperventilate by breathing too deeply
  14. @CallieAndToby22 Sometimes you can call and ask them to put you on a "cancellation list." They would call you if someone else suddenly cancelled and you could take their spot I think people with dysautonomia cancel all the time due to their fluctuating health, so I think there is reason to hope!
  15. I think you should retest without those things. Those definitely seem like things that could falsely make you seem better than you were If you were at 27 before, does not seem crazy that you would be 30+ without those aids
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